Wednesday, October 24, 2018

Ever since I was a little kid I’ve been clumsy. I tripped on thin air. I fell. A lot. I rarely broke things but I sprained everything. I was always covered in bruises. In all honesty I’m surprised no one ever called the cops on my mom thinking she’s abused us. I was always bendy, double jointed. I remember my friend making me take off my shoe to show other kids the weird tricks I could do with my toes. Apparently I’ve since learned I was dislocating and subluxing joints. Oops.

Now in my late 30’s I’m in pain. Like a lot of pain. I’m tired. Everything hurts. So my doctor ordered a bunch of tests. I had heightened levels of inflammation but not lupus or rheumatoid arthritis. No celiacs disease. My doc was kind of stumped. She said I could have something else or one of the rarer things that didn’t show up in tests.

Then A broke her leg. Walking on a flat surface. She didn’t fall it just popped. The doc at urgent care who diagnosed her was kind of freaking out that she just broke. She mentioned all sorts of random things. Osteo imperfecta. Ehlers danlos syndrome etc. she made me promise to follow up with the ped or ortho or whoever and find out why. The ortho wasn’t concerned. He mentioned that he sees random stuff like this after a growth spurt sometimes. The end of the bone is brittle and pops. But then I was talking to one of her doctors about something allergy related and Ehlers Danlos came up again.

So I consulted DR Google. (Hey. Kiddos doc has approved my dr googling. He said there are great resources just be careful and don’t make huge changes based on dr google without consulting first. Ha. ) anyway as I was reading about EDS a lightbulb went off in my head. Besides two different doctors mentioning it, it fit me (and half my family) to a tee. Like a lot.

Monday, October 22, 2018

We’ve come so far and learned so much. And seen so many medical professionals.
We’re still not sure what’s going on with Kiddo. She’s been diagnosed with orthostatic hypotension. (Low BP. )And it’s worse when she stands. Her pulse shoots up. She may have something called POTs. Positional orthostatic tachycardia syndrome. When she stands up her pulse goes super high. Little kiddo and i were both diagnosed with a rare genetic condition. It explains so much. Big A sees the geneticist tomorrow. We’ll find out if she has it too. I expect she does. Sorry kids. Apparently my genes suck.

About Me

I'm a stay at home mom with two not so small anymore children, and a hubby who works, a lot! I do childcare too.Four years ago we moved to a new city. I like to sew, scrapbook and be crafty. I've lost 160lbs. I eat weird foods because of it. I'd like to lose 20 more. I rarely get a second to myself and most days, I'm just trying to stay sane. :-)